What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

I totally hear you, I’ve felt this way a lot recently and yes it is utterly crap!
Sending empathy 💐

Thank you

I’m not going to suddenly improve so I have to accept I need the support

It just frustrates me that things which once came easily are an ordeal now

Sorry @ValleyClouds it must be so frustrating needing help for every little thing. 'Only' having me/cfs which does indeed fluctuate is probably a walk in the park compared with what you have to put up with. 💐

I've realised after the last few years that my pride sometimes makes things worse for me. I have wasted so much mental energy being indignant that I can't do x or y anymore! Pointless. My DH is a treasure but he struggles with housework and cooking. He's a lot older than you spring chicken 60 year olds 😉and has a bad hip which is just holding out at the moment. I try to think of ways to make life easier for him but eg he won't cook meals involving what he thinks would need too many pans YET he refuses to put pans in the dishwasher because he has his system for loading and they would take up too much space grrr. So you can only do so much.

Some little things I have thought of though. We're due to get a new bed and I was wondering about going to kingsize or bigger but don't fancy changing a massive duvet cover. I struggle with a double as it is, although DH helps. Of course why don't we get 2 single duvets, then one person can do it unaided? I'm looking into a self emptying Roomba too. We've got an old one and it's too heavy for me to lift (neck!). I think a water softener would help with cleaning.

When I feel down about being useless I spend a few hours investigating how we could make life easier. I've got a wish list!

That's a great idea about the duvets @TeaAndStrumpets - I've got a washable one so no wrangling covers and that's been very helpful. Self-emptying robot hoover has also been wonderful.

Hugs to you @ValleyClouds

I still have no oomph but have just had a good counselling session. Lots to ponder on.

@TodayIsatrickyone yes it probably is a good idea to start accepting it, it’s hard though even though I was diagnosed in my teens so I should have learnt some acceptance by now!

Sorry that must have been really tough for you 💐

Home from work and in bed with a cuppa. We had a shared lunch today for a colleague who is retiring and I'm still full from that! Fridge raid for tea I think 😋

I'm on the count down to summer holidays now - not too many more get ups 🥳

Have a restful evening all 💕

Acceptance is so hard.

Just checking in hope everyone is ok!

@JewelleryCat I get what your saying about the logic side of I think the same way but unfortunately it doesn’t work like that 😢 I’m still working on the acceptance side of it 🤞

getting there slowly back to work next week I hope! going to ask for phased return and work out what adaptations would actually benefit me aswell.

Morning, ugh, still entirely lacking in oomph. I think it's a bit of a midsummer thing, I never sleep well at this time of year and I feel it should be a time for lazing about.

One of the things I was talking to my counsellor about yesterday was making processes nicer (e.g. the house hunting). I'm trying to work out how to do this with some really tedious admin jobs today. Also really need to make a start on decluttering, so about to go and grab a bin bag to start putting bits and pieces in as I go about things today.

Good luck for next week @Dozymoo42 and hope you get your phased return and adaptions. No, it unfortunately doesn’t work like that with logic but I wish it did then it’d be so much easier

Morning all, dentist again later today which I’m dreading and hoping I don’t need this tooth removed at least. 🤞 So will rest around that.

Hope symptoms ease soon @JewelleryCat

I think I worded it clumsily using the word acceptance 🤔 I meant more that for me, the realisation that it’s a fluctuating illness and it’s not necessarily something I have or haven't done perhaps helped a bit but any kind of prolonged crash or relapse is just incredibly hard.

Good luck with a phased return @Dozymoo42

I like that idea of trying to make processes nicer @martha79 Would something like playing some favourite music help? Though if it’s anything cognitive I need complete quiet but if it’s sorting a cupboard or something it helps!

We have a few areas to declutter and I set a small goal of 5 items a day. All got put on hold with recent illness but I was making a bit of an improvement very slowly!

Fingers crossed for the dentist today @TodayIsatrickyone you will be better whatever the outcome!

All my random symptoms continue. Last night I was curled round a hot water bottle with IBS pain, this morning it's all gone. It's like everything gets shaken up when I have PEM, and my body goes through its repertoire of discomfort. I think it is basically inflammation.

I am always trying to declutter @martha79 ! Good luck with the house search - it must be a bore changing addresses for lots of things. We haven't done it for so many years I am dreading it.

@Dozymoo42 hope all goes well with your return.

@JewelleryCat it is hard but really we are floating not swimming...just enjoy life as and when you can 💕

Morning all

@Dozymoo42 good luck. Hope they make things as easy as possible for you.
@TodayIsatrickyone I too was at the dentist this morning. Thankfully a very quick fix. Hope your visit has a good outcome 🤞.
@TeaAndStrumpets glad you feel better this morning.
@martha79 I blast out some 80s music. Definitely helps getting me motivated.

Actually slept last night after 2 sleepless ones so feel better for it this morning. My strength is declining & my consultant is being very slow responding which I am not happy about. I truly wish they could spend 24hrs in our bodies. Treatment would be faster & more sympathetic if only they experienced what we do.

Have a good day all 😊.

@TeaAndStrumpets sometimes it’s hard to enjoy life when you’re feeling stuck. Can’t drive because of it and my other health stuff, too rural for public transport so thank goodness for online shopping and Mumsnet even though I’m not a mum

Do you have any community bus services? DD2 lives miles off a bus route in a tiny hamlet. There is a minibus that can be booked in advance that trundles round all the villages on a flexible route. People can get dropped at the market town 4 miles away or anywhere on the route. It's quite slow though, if it has a lot of stops booked.

It is extra hard if you live rurally, but yes I think Mumsnet is a real lifeline for people who can't get out easily. It's so nice to chat!

@CoffeeBeansGalore that thing about walking a mile in another person's shoes is so true!

I'm not a mum either and I love this place, mainly this thread though. It keeps me connected and feel less alone.

Hope everyone is well. We had a man from the ONS here this morning for a survey. Now I've made a cuppa and I think I'll get back into bed.

Anyone else feel cold internally but clothes are too warm? I've got that today. It's warm in here but it's like my blood pools. I need to just waft about in a muumuu I think

I think you need a cocktail in one hand and a long cigarette holder in the other!

If there are @TeaAndStrumpets I haven’t seen any about and I wouldn’t be able to use them at the moment anyway with how I’ve been feeling

@bedfrog I’m usually here, telly addicts, neurodiverse mumsnetters but that’s quiet. There was an autistics assemble topic in chat I used to be on but I haven’t seen it in chat for ages. I read the Christmas topic from about September/October onwards

Hello gang.

I'm feeling awful. Super shaky and got all upset about nothing and everything last night. So I did my main deadline thing for work first thing this morning and now I've put out of office on, cancelled all meetings this morning and I'm on the sofa watching Clarkson farm.

I'm going to try and do nothing for 24 hours at least. Or as much nothing as I can get away with.

My temperature is all over the place at the moment, I keep getting cold (actually put electric blanket on for an hour last night) but then put too many layers on or move a bit and I get too hot.

I did indeed put some tunes on and get through the boring jobs.

Also not a mum but hang out here and one other friendly thread, with an occasional visit into other ones!

Yeah @martha79 I'm here in a vest top but with a blanket. All a bit messed up temperature wise too.

Do you think it would help to start a thread of your own? Maybe revive the Autistics Assemble one, or go for a more catchy title to pull people in? There will be people out there who would be really grateful.

"If you build it, they will come" !!

I’m not sure about starting a thread, I wouldn’t know what it would be about because I’m rubbish at thinking and I’m mostly a reader and occasional talker lol

Thank you everyone! I have my 🤞 as I really want to be able to work!

I love this thread @bedfrog @JewelleryCat even when I’m not feeling up to posting I love just flicking through catching up on how everyone is doing. Like you say it’s a connection when your not leaving the house much socially - @Swanhilde always has kettle on 🥰

@MewithME I hope your planned rest does you good lovely

I’m a mum @martha79 but they all adults now so less in my child rearing phase(although not fully out of it at times 🤣) I potter (lurk) on other threads and start some of my own if I need advice on something but this is the only one I return to regularly- I also follow the Christmas board as I am one of those people that likes Christmas no matter what season we are in gives me comfort 😊

@TeaAndStrumpets loving the field of dreams reference there! 😊